Engaging research participants to inform the ethical conduct of mobile imaging, pervasive sensing, and location tracking research
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Researchers utilize mobile imaging, pervasive sensing, social media, and location tracking (MISST) technologies to observe and intervene with participants in their natural environment. The use of MISST methods and tools introduces unique ethical issues due to the type and quantity of data, and produces raising new challenges around informed consent, risk assessment, and data management. Since MISST methods are relatively new in behavioral research, there is little documented evidence to guide institutional review board (IRB) risk assessment and inform appropriate risk management strategies. This study was conducted to contribute the participant perspectives when considering ethical and responsible practices. Participants (n = 82) enrolled in an observational study where they wore several MISST devices for 1 week completed an exit survey. Survey items focused on the following: 1—device comfort, 2—informed consent, 3—privacy protections, and 4—bystander engagement. The informed consent process reflected participant actual experience. Device comfort and privacy were raised as concerns to both the participants and bystanders. While the majority of the participants reported a positive experience, it is important to note that the participants were volunteers who were not mandated to wear tracking devices and that persons who are mandated may not have a similar response. Findings support strategies proposed in the Kelly et al. (2013) ethical framework, which emphasizes procedures to improve informed consent, protect privacy, manage data, and respect bystander rights when using a wearable camera.
KeywordsMobile health mHealth Research ethics Pervasive sensing Geo-location Location tracking GIS GPS Wearable camera SenseCam IRB Informed consent Privacy Institutional review board
We would like to thank the iWatch participants for contributing to this study. We also acknowledge Lindsay Dillon, MPH, who contributed to the development of the survey and Elizabeth Booen, MS, who assisted with the data management.
This study was conducted with the participants from the NCI-funded Validating Machine-Learned Classifiers of Sedentary Behavior and Physical Activity study (PI Kerr, Grant # R01CA164993, IRB # 111160). We also acknowledge the Robert Wood Johnson Foundation’s support of the Connected and Open Research Ethics (CORE) initiative (PI Nebeker, #72876, 2015-2017) and the Impact of Privacy Environments for Personal Health Data on Patients (PI Bloss, R01 HG HG008753)
Conflict of interest
The authors declare that they have no conflicts to report.
Informed Consent Statement
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study.
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